The last time I was a normal kid was at my third grade Thanksgiving play. I was dressed as an Indian girl, and my mother had pulled my hair into two long braids that swung whenever I turned my head. My parents were always good at making costumes, and I stood proud as I read my lines. We all went home that night – my mom, dad, brother and me – and prepared to wake up early the next morning for my first biopsy.
At first we had mistaken the marks on my skin as mosquito bites. But the marks didn’t itch and they didn’t go away. They grew. The first pediatrician Mom took me to gave me an antibiotic. The second doctor prescribed a different antibiotic. The bumps continued to grow.
Then the lymph nodes under my arms began to swell. I started complaining about my head aching, and we found a swollen lymph node at the base of my neck. I think Mom took me to at least five doctors before we found Dr. Patrick.
Dr. Patrick immediately ordered a biopsy.
Dressed in a hospital gown that was too big, with blue non-skid socks on my feet, I was wheeled into the operating room. As a cancer kid you learn things about surgery. Like not to let them use gas because it gives you nightmares. Or if you try to count to ten before the anesthesia kicks in, you forget to be afraid. But we didn’t know any of that yet.
During surgery they removed a lymph node from under my arm and two of the bumps from my back. Afterwards I went home, a little sick from the anesthesia and hurting from the incisions.
It was the week of Thanksgiving in 1988, and it would be the first time we would spend the holiday without my grandparents and cousins. My parents didn’t think I’d be able to travel, but I begged to go. My dad made up a bed for me in the car’s back seat and one for my brother in the floor boards. Three hours later we arrived at my grandparents’ house. That Thanksgiving ended up being the most memorable of our lives. Safe and surrounded by family, we were able to put aside the fears of what might be ahead of us.
The next week we met Dad at Dr. Patrick’s office to find out the results of the biopsy. My brother and I stayed in the waiting room skimming the backlog of Highlights Magazines. When Mom and Dad came to get us, I tried to read the look on their faces.
I rode him with Mom. It was dark and raining. I remember the whisper of the windshield wipers as I asked Mom what was wrong with me.
“You have cancer,” she said.
“Am I going to die?” I asked.
“We don’t know,” she said.
The next few hours were filled with tearful phone calls and hurried packing. We were leaving for the University of Kansas Medical Center the next morning. I hugged my favorite stuffed animal and prayed there had been a mistake, a mix up. But I knew it was real.
I was eight years old when I was diagnosed with Non-Hodgkin’s Lymphoma. It was an odd cancer for someone my age. Most of the kids I met in the hospital had leukemia. Their treatments were longer and more aggressive. Once I started chemo, my cancer slipped into remission and stayed there. Sometimes I felt guilty that it was easier for me than them. That the chemo was working for me while it was failing my friends.
Kristin died before I ever saw her outside of a hospital wheelchair.
Clifton Patty died before I could ever see what he looked like with a full head of hair.
But I survived.
My last chemo treatment was in November of 1989, a year after that first biopsy. I asked my mom if I was cured.
“I don’t know if the doctors will ever say you’re cured,” she said.
“Not even in 20 years?” I asked.
“Maybe in 25 years,” she said.
I heard many reasons for my survival: God has big plans for you. You’re meant to do great things. God wasn’t ready to take you yet. You have an important role to play in life. How else could you explain why I had lived when other kids hadn’t?
People sometimes ask me how having cancer changed my life. The truth is I can’t imagine my life without it.
In 2009, through a series of life’s circumstances and difficult decisions, I ended up moving from Los Angeles to Michigan, unemployed and without a permanent residence. That summer I volunteered at Camp Quality, a week long camp for kids with cancer. I had been a camper at the NW Missouri camp for many years. Those were some of the best weeks of my life.
Hoping to use my experiences to help others, I’ve occasionally volunteered at cancer-related functions. But it’s difficult for current patients or parents of cancer kids to identify with my experiences. Cancer treatment has changed so drastically in the past 25 years that my story no longer resonates with newly diagnosed patients. And children live in the present. Adulthood seems so far away; it’s not easy for them to look at me and imagine I was a kid with cancer.
Yet sometimes I suspect my volunteering is selfish too. After treatment and as my hair started to grow, I merged back into normal life. It wasn’t an easy transition. I had skipped a year of being a kid. I felt like an outsider, a feeling that never truly went away. And my attempts to find a place in the cancer community as an adult never took hold.
At Camp Quality each camper is assigned a companion, a “best friend for the week.” When I was a camper, I looked forward to seeing my companion every year I returned to camp. Sometimes the relationship between camper and companion becomes so strong that the companion becomes an important friend to the family through the treatment process.
Often Camp Quality will allow siblings of cancer kids to attend camp if it makes the patient more at ease. My camper was a sibling, a hyper nine-year old boy who loved guns, mud and frog hunting. His brother was being treated for leukemia. A few days into camp I was exhausted, tired of ending each day caked with mud, and ready to go home.
One night at dinner I was enjoying a small break from my camper. I felt a light tap on my arm and looked to see a kid in a wheelchair seated next to me. He pointed to a scrape on my arm then showed me the scar from when his port had been inserted.
Chemo is harsh and treatments are often long. It’s too big of a job for a regular vein in your arm, so cancer patients usually have a small device, called a port, inserted under the skin. The port is attached to a catheter which is inserted into a large blood vessel near the collarbone. Instead of poking your arm each time with a needle, chemo is injected into the port which delivers medications directly into the bloodstream.
I smiled and showed him my own scar from a port. His eyes widened, then he lifted his shirt and revealed a splenectomy scar. And laughed when I shared my own scar that started low on my belly before curving around my navel. We continued this way for several minutes before another camper caught his attention.
But our brief exchange gave me a surreal feeling of normalcy. He had known most of my story by the marks we both shared. He didn’t need to ask about the weeks of recovery after the removal of my spleen or how I still occasionally walked with a limp that favored the side of my body where my port had been. He already knew. And after a cancer kid grows up, there are very few people who really know.
A few months later, still unemployed with scarce job prospects, I started volunteering at Camp Bluebird in Western Michigan. Camp Bluebird hosts a yearly retreat for adult cancer patients. It’s a celebration of life and a way for those going through treatment to escape from the daily grind. The Michigan location was beginning to offer weekly support groups and one morning I decided to sit in.
The group was led by a woman who had recently completed treatment. Her hair had already started to grow back thick and healthy. (My mother used to joke to people who would compliment me on my post-chemo hair. “A year of chemo, hospitals, doctors, and hundreds of thousands of dollars…and you too can have this fabulous hair.” But usually the only people who laughed were part of our cancer clique.)
The meeting started and everyone introduced themselves. We were asked to share our cancer story. A couple of people declined and I had intended to pass when my turn came around. But instead I began to speak and my story came loose.
I spoke about the chemo – the names of the drugs still rolled off my tongue. I spoke about the hair loss, about the 24 pills I took twice a day. I spoke about my friends who had died. I spoke about being 29 years old and being unable to find my great purpose in life. Why had I survived? Why?
When I was first diagnosed, our family friend and minister visited me in the hospital. He told me about the many years he spent on crutches due to an accident that had damaged his leg. His leg wouldn’t heal and he was in pain. “I kept asking God every night, ‘Why? Why me?'” he said. “I didn’t begin to heal until I stopped asking Why. There is no answer to Why. It is what it is. You must accept that and find a way to better it.”
After that we stopped asking Why and started to figure out how to heal.
Over 20 years later, as I sat in a cold metal chair among strangers, I remembered that conversation. There was no answer to why I had survived when others hadn’t. It wasn’t because my family had prayed harder or because I was meant to save the world. My body had responded to treatment. I had spent most of my life trying to validate my existence. An impossible task. How could I ever compare what I had done in my life to the potential lives of those who had died?
I had an opportunity to live. What greater purpose is there?
To live. To feel joy and pain, excitement and failure. To dream and pursue. To love.
Twenty years after my final chemo treatment I made the transition from cancer kid to adult. And I threw away my crutches.
This week I celebrate 25 years of being cancer free. In the last five years I’ve started to build my future. I am a hard worker, a doting wife, a dreamer, a writer. The world’s shackles of great expectations have been removed and I have begun to live. I am a survivor.
See! I will not forget you. I have carved you on the palm of my hand. — Isaiah 49:15